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What activities help your POTS symptoms?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Fogbuster, Sep 1, 2013.

  1. Fogbuster

    Fogbuster Senior Member

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    These are mine so far to help improve symptoms:

    Grounding
    Meditation
    Deep belly breathing exercises
    Going for a jog or walk.

    These are all effective are but as you probably know from experience, as soon as you stand up the symptoms come back again. I would love to know any experienced POTTERS ideas.

    Best wishes
    Jamie
     
  2. Valentijn

    Valentijn Activity Level: 3

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    This is an ME/CFS forum, and exercise tends to make us very ill for quite a while.
     
    xchocoholic and SOC like this.
  3. Fogbuster

    Fogbuster Senior Member

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    Yes and I have been diagnosed with CFS/ME.
     
  4. taniaaust1

    taniaaust1

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    Unfortunately none of those help my POTS at all. I did regular exercise for a couple of months back when I was a bit more able as a doctor said toning my leg muscles etc woud help unfortunately it didnt at all, the POTS still was just as bad. This is the common case for those of us who have ME. If things like meditation help your POTS, it sounds like your issues are more stress induced.

    The normal common POTS things used to treat it help me some (except that exercise which is often recommended to people) . My POTS thou is still very very bad, only about 45% controlled with all the things below (so I still get a lot of collapses with it)
    - Florinef
    - Clonidine
    - medical support stockings (I wear to top of legs)
    - Taking care not to do mutiple POTS triggering things at once eg eating (which is a POTS trigger) in a too warm room .
    - Avoidance of POTS triggers as much as possible (to help prevent collapsing) eg avoiding raising both arms above my head or standing in a quene.
    - Fluid loading (I also take a lot of salt but the salt doesnt seem to do much for me, constantly drinking (sipping) thou helps

    Im currently wanting to trial saline IVs for my POTS due to all the issues I have with it. eg I had two collapses with it last Tuesday while shopping, I only just made it into the shopping centre door before I collapsed (that was with also using a Disaiblity park outside so didnt have far to walk).
     
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  5. xxRinxx

    xxRinxx

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    -Florinef
    -Cold showers or baths
    -Leg binders/Stomach binders
    -lots of water
    Are the things I use to keep my POTS under control(sort of), the cold showers do wonders though when its really bad, and since being on Florinef I don't feel like I'm going to pass out alll the time. I wear the leg binders or stomach binder when its really being fussy and that's helps a bit. Practicing low-intensity muscle exercises(flexing, holding, release) also helps when standing in a public place.
    My advice to people with pots is never take a warm/hot shower in the morning or at night whenever you bath..It takes away some of the joy of it, but you don't get sickly after it either, haha.
     
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  6. Sparrowhawk

    Sparrowhawk Senior Member

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    - Salt (Dr. recommended up to 3g/day but I do fine on about a gram)

    - Colder, shorter showers <-- wow was this a big revelation.

    - Drinking a big, cool glass of water first thing and getting back in bed for 15 min. Really it sets the right signal to the body somehow (see article below) I've been doing much better this week with POTS with just this approach.

    - pacing back and forth in the kitchen rather than standing still (I note my heart rate is lower pacing than standing)

    - My Dr. sent me this article, which I felt helpful for understanding the underlying dynamics of the issue:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/

    As the article states, the knowledge alone helped me feel empowered to manage the issue. Hope it may be helpful to others here.
     
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  7. SOC

    SOC Senior Member

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    Thanks for the article link -- it's very helpful. I'm printing it out for members of my family, too.

    This little bit is relevant to this conversation. Notice that jogging is definitely not on the list of exercises recommended for people with orthostatic hypotension. Swimming or recumbent biking sounds good, though. I hope I get there some day. :)



     
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  8. Sparrowhawk

    Sparrowhawk Senior Member

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    I'm all for immersion in a pool. But the last time I did I felt sick as a dog from the chlorine. One of our neighbors has a "salt" pool and that was mighty fine. I just don't have carte blanche to visit all the time. I have the same issue with baths, our water is so chlorinated. I have a shower filter, but I can't figure out how to have a bath in water that isn't reeking of chlorine. I think I'm a bit MCS about it.
     
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  9. xxRinxx

    xxRinxx

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    I can't tolerate Chlorine either, i can take Bromine(which is what my family uses especially for me, haha) for little periods of time..but i've alwaysss been sensitive to Chlorine, even before being sick. I'm converting the pool at the house i'll be moving into soon into a salt water pool so i can get some exercise in and not get a migraine, haha.
     
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  10. SOC

    SOC Senior Member

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    Ditto on the chlorine. Never could tolerate it. I didn't realize how nice being in a pool could be until I swam in a pool that used bromine instead of chlorine. What a difference!
     
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  11. ukxmrv

    ukxmrv Senior Member

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    Cold water immersion (but needs to be deep, very cold and without chemicals)
    Glasses of cold water or Gatorade type drinks (but only if I can tolerate the colours/flavours of the drinks)
    Sudafed (for the Epherdrine I am guessing)
    A chair that lets me lie upside down (my dentist has one that tilts me back)
    Air conditioning (cold)
    Lying flat

    (not exercising at all is best and avoiding standing -

    and most of the things that you mentioned make it worse or have no effect on me)
     
  12. SOC

    SOC Senior Member

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    Most of those are vasoconstricting things, right? Have you tried Florinef? I can't stand Gatorade or other sports drinks, but Electro-Mix in water works for me. I drink it in ice water, too.
     
  13. rosie26

    rosie26 Senior Member

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    ukxmrv

    I don't think I could stand to lie upside down. Is your head below your body ?
     
  14. xxRinxx

    xxRinxx

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    Being upside makes me dizzy as all heck, haha. Any strange position of my head and I loose orientation quickly. I made the mistake of trying to flip in the pool like i used to on swim-team before i was ill and almost drowned, haha, not my brightest decision.
    How far do you tilt back?
     
  15. IreneF

    IreneF Senior Member

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    I stopped taking baths and showers. I mostly do sponge baths now, and wash my hair in the kitchen sink. There's a big ick factor, I know, and my skin has gotten dry. But I feel better.

    Aerobic exercise and yoga both triggered POTS, back when I was able to do those things. Florinef and salt loading didn't help much. Neither did compression hose below the knee.
     
  16. ukxmrv

    ukxmrv Senior Member

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    rosie26 and xxRinxx, I only noticed this when I went for a dental check (the outside down part) and my new dentist was really short. The chair he had went horizontal and then he moved it even further so my head was well down and my legs up. The chair supported me very well. After the exam I felt better, less dizzy and far better than any other dentist visit.

    Been the same since then.

    I've been trying this at home and putting together pillow combinations around the bed and sofa to try and get the right angle with little success. My spouse has had to rescue me a couple of times.

    SOC, I've not tried Florinef or any of the of the usual things. In the UK I can't get them prescribed on the NHS and I've not had a chance to see if my CFS doctor will (or checked the price for a private script).
     
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  17. SOC

    SOC Senior Member

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  18. triffid113

    triffid113 Day of the Square Peg

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    Please see the POTs causes I have found thread. To those of you who find POTS is helped by salt, this sounds like adrenal insufficiency to me. Have you checked that? There is a DHEA:cortisol (cortisone?) ratio of 10:1 that if you get too much cortisol/cortisone per the DHEA you have causes an over-stress response (adrenal insufficiency). Coffee drinking can cause it because 2 cups of coffee raise cortisol 33% (which is ok when u r young and make a LOT of DHEA...but even the young abuse this. I used to drink 20 c. of coffee /
     
  19. SickOfSickness

    SickOfSickness Senior Member

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    I have that chlorine problem too.

    Filters for tub faucets exist. The one I saw on Amazon has poor reviews. I don't know if this one is good or not. http://www.allfilters.com/showerfilters/waterfilters/sprite-bath-ball\

    But I would just fill the tub with the showerhead water. If you don't have a shower wand, there are inexpensive diverter wands where you can keep your same showerhead, or replace yours.
     
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